Distance Complicates Caregiving

Caregiving can be challenging when the
person being cared for is living in the same house. It can be
even more difficult when the caregiver and the person with
Alzheimer's live hundreds of miles apart. In today's society,
often a distant relative must assume the role of primary
caregiver. Mary York's suspicion that something was "not
quite right" with her mother was confirmed when she learned
from a friend that her mom suffered from hallucinations and
became lost in her own neighborhood. "When we'd talk on the
phone she told me she felt fine and seemed to be in good
spirits," recalls York. "But when I heard what was
happening and saw for myself how confused she had become, I knew
she couldn't be left alone." York consulted with her
mother's physician and decided that it would not be a good idea
to move her out of the town where she had spent most of her life.
"I knew her staying in Kansas wouldn't be as convenient for
me, but once we had the appropriate support services in place, I
felt it was the best option for mom." York spent the next
several years traveling back and forth over 800 miles - often
monthly - personally coordinating her mother's care. "It was
worth it," she says. Long distance caregivers of people with
Alzheimer's disease face the same emotional and financial
concerns as those who live close by. Mary Frenza, executive
director of the Alzheimer's Association's South Central Michigan
Chapter, believes they also carry an additional burden of not
being able to see for themselves how dementia is affecting their
loved ones. "Distance can cause feelings of guilt and
anxiety for the caregivers," says Frenza. "That's why
ongoing support and coordinated care are so important - not only
for those affected, but also for their caregivers." York
agrees. "When you're the primary caregiver, distance doesn't
change the issues or responsibilities you face, it just makes
them a bit more complicated." York says that with the right
mix of services, ongoing coordination, and support from nearby
friends, long distance caregiving can work.

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Make a visit, see what's going on

"Too often, families wait for
something catastrophic to happen before they start making
appropriate arrangements for care," says Anat Louis, family
connections program coordinator at the Alzheimer's Association's
Los Angeles Chapter. "Planning ahead will help ensure
comfort and safety, and reduce the number of 'crisis calls' long
distance caregivers receive." Louis suggests caregivers
spend an extended period of time with their loved ones to
determine what services are needed. Caregivers should evaluate
affected persons to determine how well they perform daily
activities related to personal care (e.g., bathing, toileting,
grooming), housekeeping, cooking and driving. They should also
pay careful attention to decision-making abilities and evaluate
current living environments. "Don't assume that a recently
diagnosed person doesn't need some assistance," reminds
Louis. "People with Alzheimer's need support throughout the
course of their disease - from beginning to end."

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Creating a circle of care

When caregivers live far away from
family members with Alzheimer's, friends, neighbors, nurses, care
managers and home health workers become a caregiver's eyes and
ears. York relied heavily on a few close friends who
"checked up on things" and lent a helping hand.
"At first, support and assistance from friends in the area
was enough," says York. "But eventually, mom required
more care." York placed her mother in a local nursing home
where many of her long-time friends also lived. "It's
important to maintain ongoing communication with facility staff
and friends who visit regularly." But York warns that even
trusted friends and care providers don't always provide a
complete picture of what's going on. "At one point, mom was
hitting people, but no one told me about it," recalls York.
"Everyone thought the news would upset me. What upset me
most was that no one told me what was happening." During
support group meetings, she urges other long distance caregivers
to plan periodic visits, so they can see for themselves how
things are going.

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Securing appropriate care services

Locating service options in a community that you're not
familiar with can be tough. Fortunately, there are a number of
individuals and organizations that can assist. "We help long
distance caregivers sort out important issues and link them with
association representatives in their loved one's community,"
says Louis, who's currently working with staff in Philadelphia to
identify care options for a California family. To locate the
association chapter nearest you, call (800) 272-3900. Also,
caregivers can contact the U.S. Administration on Aging's free
Eldercare Locator Service at (800) 677-1116 for help in tracking
down other local agencies across the country. A geriatric care
manager can also help caregivers determine what assistance is
needed for individuals with dementia. Most will also identify
local options and oversee a person's daily care. These services
can be costly, but according to Frenza, may be particularly
useful for out-of-town caregivers. Contact the National
Association of Geriatric Care Managers at (520) 881-8008 for a
list of care managers in your loved one's area. Frenza suggests
that all families, particularly those caring for someone in
another state, do as much advance planning as possible. "At
the earliest point possible, ideally while the person with
Alzheimer's can still express his or her wishes, family members
should discuss how legal, financial and medical matters will be
handled in the future." Frenza advises. Social workers,
clergy and an attorney can also help families with planning.
"My lawyer was a tremendous resource and an important player
on our care team," says York.

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Support for caregivers crucial

Caregiving can be a stressful
experience, especially from a distance. Even when caregivers are
not physically providing support for relatives with Alzheimer's,
they're still mentally coping with personal difficulties
associated with the disease. Louis encourages long distance
family members to attend support group meetings. "People are
comforted to learn they're not alone," says Louis. York
believes all caregivers share two common goals: quality care for
the person affected and peace of mind for the caregiver.
"When caregivers work toward this goal, I hope they
recognize they're doing the best they can, no matter where they
are."